Keeping Track of My Father's Exit. By Alan G. Ampolsk

The Story So Far

I'm a writer, photographer, consultant. Age 51. My father was a reporter and editor. Then he became something other than that. He died February 8, 2010 at 87. He was widowed in 2003. His decline started a little earlier. His sister died of Alzheimer's.

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The Medicaid circus continues to roll through town. Today at 9 I got a call from CASA, telling me that an MD would be visiting my father at 10 to conduct the physician's assessment. Called M and E to alert them, then sat back as usual to wait. Still waiting, not expecting results 'til next week, or next month, or whenever.

Yesterday's adventure had to do with Partners - yes, again. D went on vacation, Partners was supposed to send a covering aide, Partners didn't. Partners blames D for leaving a day early, D is out of reach. E covered the extra hours and I didn't find out about any of this 'til today. I handed the whole matter over to M, who fired off a variety of e-mails to various people in authority threatening various things. Since she's part of the caregiving establishment and can actually influence which agency gets what referrals, the odds are she'll get better, faster results than I did when I was in the e-mail-firing-off business.

Speaking of that, I've been trying to mend fences with the lawyers and also with E, who according to M seems, yet again, to be rising to the occasion, taking responsibility, etc. We'll see if that lasts - it hasn't the past few times. But if it does, I'm open. I have no preferences other than what works. As to fence-mending, it seems to be getting me better results, the way it usually does. And it gives me something to do as I sit here on a slack work day, trying to get my sinuses open. Interesting cycle when you think about it - I got fatigued and went off my practice (meditation et. al.) and started losing it with people, in particular E, which led my immune system to quit, which meant I couldn't go back to meditating because I couldn't focus on the breath because I couldn't breathe, which led me to lose it with still more people. The short version of this is that I lost it because I lost it. Nice and circular. Now coughing in a frightening way and trying to get it back.

Decided to give myself the caregiver's version of a busman's holiday and watched The Savages. Had missed it in the theater. Well-meaning people, including several family members, warned me off it. Can't blame them. I think they were remembering my unfortunate experience with About Schmidt, which I saw five days after my mother died and which was not, all things being equal, a comfortable experience. As in, there was the scene in the funeral home where he bickered over the cost of his late wife's coffin, and I spent the rest of the night wondering how they'd gotten the listening devices into our meeting that week at the Riverside Funeral Home so they could take down our dialogue verbatim. The Savages wasn't like that. Good enough - very good in certain respects - but when it comes to the dementia, completely generic. Philip Bosco, a good actor, becomes depressed and uncommunicative and acts out in various predictable ways. Fine, whatever. The film isn't really about the dementia, it's about the children's reactions and relationships, and they have all their indie-film specifics - they're professors and playwrights and they were estranged from their father and things like that. They have difficulties and grow through the experience. The details feel inventive in that writerly way.

This must be how dementia looks to people who live on earth.

How it looks to people who live on dementia is, there are always these details and they're always very precise and completely unimaginable. A new set of examples: Wednesday morning on the train, got the usual round of calls from my father, panicked again because he had to go back to the gerontologist's again to have a nurse check his ear blockage. He only vaguely remembered that he had the ear blockage and announced that E was taking care of it with the ear drops. I told him, again, that Dr. R wanted him to visit. That held us 'til the evening.

During the afternoon I took a call from M, who conferenced me in with a representative from Premier, who'd worked out a way that, although they don't cover Manhattan for Medicaid, we could grandfather them in by getting them to take over the night shift for E's sister. Boots on the ground and such. I asked the hourly and then found myself running through back-of-the-envelope calculations and told them that they'd just driven up my overnight costs by a third, which translates to an extra $500 a week, which is a figure you can use to start to work out for yourself the current run rate. Decided to pass and wait for the verdict from Medicaid. Then called the broker and had a big chunk of cash moved into the checking account since I'm allowed that under the higher Medicaid limit. It ought to last for a week, maybe two at the outside.

Then uptown to see my father who raved for a sold three hours. Barely took a breath. He started in on the gerontology appointments and once again I invoked Dr. R and got him moved back from the barricades. Then there was a discovery he had to share - he'd found my name and number actually written in his address book, not just on the separate talismanic piece of paper but bound into the book itself, which shows that I must be a really important person. I really ought to take the book with me, he said, because I might need the number. I told him he'd need it too, but that I'd copy it down. I then pretended to do that.

Because he'd choked last week on the lasagna, he didn't want to order it again so I shifted him over to a tuna sandwich. He couldn't figure out how to eat it - pulled it apart, went at the tuna with a spoon, then choked on that, but only mildly.

He began at one point to wring his hands obsessively, the way he had after the surgery.

I took time off to inspect the (very good) schedules and logbooks that M has put in place for the aides to use.

Thursday morning, E took my father to the gerontologist and they pulled a big chunk of wax out of his ear and now that's done.

Thursday night the Premier rep sent through three dense pages explaining how to get Medicaid-pending reimbursement for aide coverage. I can't begin to work it out but I think the bottom line is that I won't see a cent for the Partners bills.

This morning the Medicaid and Partners mini-adventures, as noted.

You know all this. If you're reading the blog, chances are you're involved in dementia care somehow and you know what it's like to hover all the details and take them in and make decisions about them while feeling at the same time that you're falling through space.